Mercy for survival

There are different types of Mercy. By definition, it might seem they are all the same thing, but they are not. There is the mercy that we show and the mercy that we seek. The mercy that we want, and the mercy that we need.

Sometimes it helps to start with a dictionary definition when you explore a concept, so from the dictionary:

noun: mercy; plural noun: mercies

1. compassion or forgiveness shown toward someone whom it is within one’s power to punish or harm. “the boy was screaming and begging for mercy”
2. an event to be grateful for, especially because its occurrence prevents something unpleasant or provides relief from suffering.

“his death was in a way a mercy”

(mercy mission) performed out of a desire to relieve suffering; motivated by compassion.

Today I am thinking about the types of mercy that a person with a disability must depend on for survival. There are a lot of small mercies that kind people do for others. But if you are disabled, ‘mercy’ takes on a whole other weight. In this post, I’m going to talk about some of the ways disabled people are at mercy of others in the public sphere.

A person who has a disability is at the mercy of a world that is structured for the ‘abled.’  Of course, that’s how it is, when the vast majority of people are physically ‘able.‘  But for those of us not in that majority, life is extra complicated – in practical and logistical terms.  Those complications affect our lives. Just as importantly, it also affects the lives of our loved ones.

ADA Legislation

Thirty years ago, the United States enacted legislation to try and level the playing field at least somewhat.  The Americans with Disabilities Act (ADA) is federal legislation that was passed in 1990. It expressly prohibits discrimination against people with disabilities. The law made it illegal to discriminate against a disabled person in terms of employment opportunities, access to transportation, public accommodations, communications, and government activities. The law prohibits private employers, state and local governments, employment agencies, and labor unions from discriminating against the disabled. Under the ADA, employers are required to make reasonable accommodations for a disabled person to perform their job function.

For public accommodations, discrimination includes “failure to remove architectural barriers . . . in existing facilities” unless it can be shown that removing a barrier is “not readily achievable” or accommodations cannot be provided through other means. Some businesses are glad to be compliant and achieve it with obviously thoughtful consideration; others are technically compliant do it with poor planning and design that can be decidedly not helpful to the disabled.

Historic structures and most buildings built before the legislation are sometimes exempt from having to comply with all the rules. The ADA does not apply to religious organizations and private clubs, which are entities that historically have been exempt from federal civil rights laws. Places of worship and other facilities controlled by a religious organization, such as schools or day care centers, are not subject to the ADA Standards. All new construction and modifications to public accommodations, and all commercial facilities, must be built in compliance with the ADA’s requirements for accessible design.

It’s tough to be disabled these days; I can’t begin to imagine how much tougher it was before the ADA. I have frequently been forced to depend upon the mercy … compassion… kindness of strangers (yes, I know that is shades of Blanche DuBois in A Streetcar Named Desire, but you know what I mean).

I became disabled while my husband was still alive. He adapted our world without complaint. Chris built a master bedroom on the first floor when the stairs became too difficult for me and remodeled the first-floor bathroom into an accessible one. An elevator lift was installed in our garage. He got a Yukon Denali, had the front passenger seat made accessible, and installed a lift arm in the cargo area for stowing my motorized scooter. He developed the habit of scoping out places ahead of time before we went to them, whenever possible, so he could try to be sure they were going to work for me. I was always grateful for his efforts. When my disability worsened dramatically after Chris’ death, I had to become more dependent upon the mercies of the world at large, and it has been tough.

I offer just a few examples –

Awkward Awards Dinner

I remember going to a Girl Scout Awards dinner not all that many years ago, where I was to be recognized and given an award. The dinner was at a very nice restaurant. I called the restaurant ahead of time to verify that it was handicapped accessible and received assurance that it was.

When I arrived for the dinner, of course, I learned the ugly details the nobody on the telephone had revealed. The accessible entrance was through the bustling commercial kitchen. After I was escorted through the kitchen, restaurant staff had to interrupt and move aside diners who were enjoying their meals, so that my motorized chair could fit between the tables. Then, to get to the dining room for the private awards dinner, restaurant employees had to lift me in my chair up a couple of steps. The restaurant staff was extremely gracious about it, but it was very disconcerting and stressful for me.

When the awards dinner was ended, the procedure had to be reversed so that I could make my exit. I was at the mercy of the restaurant staff who lifted and carried me in the motorized chair, and of all the people whose meals were interrupted so they could move their chairs or stand up and get out of the way for me to pass. It was an incredibly embarrassing experience, and one I was totally unprepared to face that night.

Snow Barriers

More than once I have been in the situation of having a business appointment during the winter when there was snow on the ground. Arriving at a location only to find that the sidewalk cuts for wheel accessibility have been blocked with snow is upsetting and frustrating. It would certainly be just as aggravating and dangerous for anybody who is simply not sure-footed enough to jump over or stomp through snowdrifts.

Similarly, I have more than once been in an accessible vehicle when every handicapped accessible parking spot in a lot has been filled with snow. It is incredibly aggravating to get somewhere and have no safe place to exit a vehicle because it was easier for snow removal workers to just dump the snow in the closest available empty spot than to take it across the parking lot to the end.  I was at the mercy of the business or people responsible for clearing the parking lot snow.

No Sleep

In the years since my husband’s death, I traveled out of state to events with my kids multiple times. Without my husband to help me in and out of bed, I had to rent medical reclining chairs from various medical supply companies. The chairs would be delivered to the hotels at which we would stay. Having a reclining chair would give me a place to sleep. More than once the medical chair would not be delivered to the hotel as I had paid for and contracted and confirmed. When that would happen, I would end up having to try and sleep while seated on the hard, plastic seat of the motorized scooter. I would assure my kids that it wasn’t that bad … But believe me, it was worse than bad. Being at the mercy of the equipment rental providers was horrible.

Transportation Troubles

For the last several years, any time I need to go someplace I must rent an ambulette. I think pretty much everybody knows what an ambulance is, but many people don’t know exactly what an ambulette is. The significant difference is that an ambulance is a medical vehicle that has life-support services within it. An ambulette doesn’t have much of that. Instead, ambulettes have support equipment like lifts and ramps to help people who use wheelchairs or motorized devices, to get into and out of the vehicle.

Ambulette vehicles are equipped with tie-down locks intended to secure into place within the vehicle whatever personal transportation device a passenger uses. Wheelchairs, motorized wheelchairs, and power scooters are all designed to be accommodated by such locks. Renting one of these vehicles is expensive; just going to the mall and back costs me about $250. Attending my older daughter’s confirmation cost me $700 in 2014. Going to my daughter’s Sweet 16 last summer was $550.

Pricing varies based on the day of the week, time of day, destination, and how many hours you need the vehicle to be available. I have been left waiting as long as 90 minutes after a pre-arranged pick-up time. It’s not like a user can just call another vehicle. Purchasing an accessible vehicle would be upwards of $35,000, which is not exactly affordable, especially for a vehicle which would not be used often. So, the rentals are unavoidable, and are yet another factor that limits my ability to go out anywhere. It is an issue many physically disabled people face.

When you rent one of the ambulettes, you’re at the mercy of the ambulette company and driver. I have had the misfortune to be in ambulettes where the ride was so rough that I literally bounced almost completely out of my chair, repeatedly. Tie-down locking system are technically secure but are not always in good repair. They are definitely not as good as wearing a seat belt. There are no air bags in the back of an ambulette. Many of the companies put the bare minimum into maintaining their vehicles; the comfort of the passengers is not a concern to them. A couple of times the assigned drivers were very professional and courteous. But there have also been multiple times that the drivers were reckless and completely inattentive to me and to the road. It is frightening and dangerous sometimes. It is another way that disabled people are vulnerable and at the mercy of others.

I think I speak for most people who have disabilities when I say we don’t want pity or sympathy. But more people to be aware of how often people are inescapably at the mercy of others, whether disabled or not. Compassion and kindness go a long way in this world … for everybody.